Doc just called back

Well, I'm frustrated. I just completed 3 weeks off Synthroid & Cytomel to prep for lab work. No thyrogen shots for me this time- I lost my health insurance. So I wrote before about how I feel BETTER off than on the meds. I never hit that wall that I have before and most everyone does being hypo. I've felt tired from time to time but workouts have kept up, long walks with the dogs and all my daily activites have been unaffected. I called and talked at length with then nurse before my lab work about all my symptoms ON the meds . Anxiety, hair falling out, nervousness, stomach issues,and did I mention ANXIETY!! (yes, the worse!) Since going off, I've felt calm , relaxed, not a minute of anxiousness. I love the change!!
SO! I did the blood work and just got a call. "you TSH is high enough, Thyroglobulin will be back this afternoon, resume your meds" !!!!!!
I asked about the call I had last week, which turns out she knew nothing about. She said STILL go back on regular meds/doses and I'll send a note to the doctor about what you said.
So now what ?
Oh and I had to ask for the numbers, but TSH is 31.95 I'm embarrassed to say, I'm not sure what that means. Good, bad ? They are happy with it apparently but then they are happy with supressed numbers as well and it's not working for me at all !
Any ideas what to do now?
They are calling back this afternoon but in the mean time I get to pop a few pills that are going to send me back to a place I don't want to go......Anxiety town. :(

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You sound overly suppressed/hyper. Do you have the lab numbers. For RAI prep, you can rely on TSH, but for fine tuning of meds, you need free t4 and free t3...and you should insist on seeing the results.

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My T4 supressed is 1.43. I never get my free T3 told to me.......I will ask!

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TSH 31.95? Are you sure it's not 3.195? 31.95 is way out of the normal range.

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Okay, what should I want it to be? The lady who called me said "thirty one point ninety five" Maybe she read it wrong?
I definitely will ask for clarification tomorrow.

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On meds my tsh is 0.020 and my t4 is 1.43

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Okay. I see what they were saying. They're saying that your TSH is high enough for RAI treatment? I'm sorry. To keep your chances of recurrence low, you should have a TSH of 0.5 or below.

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The 31.95 is off of meds. I checked my tests results online this morning (the hospital puts it online so I have access to it) and off meds it IS 31.95 . Taking synthroid & cytomel it is 0.020

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Are you prepping for RAI or was this for a stimulated Tg test? Your TSH needs to be at a certain number in order for the RAI to take effect or to do a stimulated Tg test. I would ask for more clarification or even ask to speak with the doctor directly to get a clear definition as to what this is for. Best of luck to you!

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No RAI. I was off meds for blood work (TSH and TG). Usually in the past it has been done with the thyrogen shots but I lost my insurance so this time I went off the medicine

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your TSH is just where they need it to be for the stimulated Tg test, but it is a bit low/oversuppressed at 0.02 on the meds. for the first few to 5 years (depending on each individual circumstance) the TSH should be suppressed at 0.1. this helps the Tg cells from forming.

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Update: The office called and my TG is 2 so now he wants to do a chest CT scan. AND........because of that he won't even CONSIDER a change in medicine. When I asked, she said she'd ask him and he came back with .......change cytomel from two a day to one and that's all he'd do. SO, I'm back on the synthroid / cytomel combo , same dose basically and now I have to face feeling awful again AND a possible reaccurance of the thyroid cancer. :(

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Forgot to include that I asked about T3 and she said no, they don't routinely check it. and she looked at my chart & said she didn't even see when they'd last checked it ! She said she'd send a note to the dr. to ask if he'd include it in the next blood work I'll have in 8 weeks.

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I'm very relieved that the chest CT was good. But when I asked what was next the nurse said he didn't mention anything. They send me the orders for blood work in 8 weeks- for TSH only.
How concerned should I be with a TG of 2 ?

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Becca, that is a relief about your CT scan! Usually they will do a PET scan only if the Tg reaches 10 or higher. Your Tg should come back down. Remember it was stimulated...at least that is what I was told. Mine was 0.7 and thyca was persistent in a few LNs. Then it went back to <0.2. Then I had the stimulated Tg and it went up to 0.9. They wanted to recheck in the standard 6 months. I convinced them to check it in 3 months (which will be the end of Oct. or first week of Nov.) b/c of it still being detectable. Now I think the thyca is back (or another cancer) b/c my neck and throat hurt again and there is some swelling. I am going to the ENT next week. Then the endo will do an ultrasound b/4 I see her Nov 14. That took some convincing.

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